Elasti-Girl

Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Sunday, July 29, 2012

I haven't talked much about flares. I've always just explained what I would consider baseline life; the pain that is "usual"..."average". Being that I am still able to remember what life was like when I had more pain-free moments than pain-full, I can equate my baseline over the last year to be like the ache & pain a typical person might get during their worst flu; It's always there, some movements or moments bring on a larger, gripping pain- a crescendo- screaming a piercing vibrato that ebbs and flows through out the day, with that same nagging flu pain keeping a constant tempo in the background throughout the body. That's life, I can manage it with diet, rest, exercise, etc and internal strength. A flare, however, is like fire and brimstone within every joint and connection of muscle & tendon onto bone. It's sears deep into my sinews where no hand can massage and radiates there, migrating every which way. A lot of things can bring on a flare; gluten, dairy, high fat anything, stressed, too much activity, too little activity, heat, cold and of course, nothing. This current flare looks to be brought to me by most of the above, namely stress, too much activity, extreme heat and stress (I could say it again, but you get what I mean) and it's all been going on for several weeks, which is probably why it's the worst I can remember feeling. I feel like it's concentrated in my every capillary, tendon & marrow and is trying to swell & combust to oblivion.
I hate this feeling- that this pain, this defect running in my every cell, is bigger than me; because my spirit feels so much bigger than this- yet I can't get on top of it. I keep remembering that this probably won't last forever, and even if it does, than I have other medical options at my disposal that I've been saving for this...I just don't want it to be time yet. I need more time to be able.
I have a lot going on, a lot I want to share, but first, I am determined to share my trip to California; it was magic & solace & love. I hope to be back blogging later this week to share.
Until then...I'm trying to break through this. I have work to do, and I have kids who are looking at me; my body- their future- who I have to show can make it through this too. If only I could do it for them...

What is Ehlers-Danlos Syndrome (EDS)?

•Ehlers-Danlos Syndrome (EDS) is a group of heritable connective tissue disorders affecting about 1 in 5,000 – 10,000 (though I've heard up to 1 in 25,000 depending on the study). It is caused by faulty collagens. Collagens provide structure and strength to connective tissue throughout the body. Collagen is mostly found in skin, blood vessels, and internal organs; vascular structures (the walls of your veins & arteries), hallow organ structures (GI Tract, female reproductive organs, etc.) ligaments.

•There are six major types of Ehlers-Danlos Syndrome. The different types of EDS are classified according to their manifestations of signs and symptoms.

•Many EDS patients have so many signs and symptoms, it makes it hard for a doctor to diagnose this disorder; it effects many people in different ways so I can only explain my experiences with how EDS effects me.•There is no cure and no treatments to cure Ehlers-Danlos Syndrome, only treatments to try and alleviate symptoms.